Topic: Why can't I just move on?

Forum: Genetic Testing — ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM), and VUS (variants of unknown significance)

Posted on: Apr 15, 2010 02:54PM

Posted on: Apr 15, 2010 02:54PM

Carlatap wrote:

Hello fellow BRCA+ sisters, I was dx in 02 with cancer, had a lumpectomy and radiation. After 7 years almost to the day, I was dx with triple negative in the other breast, had a lumpectomy, chemo, and radiation. I was advised to have genetic testing. My paternal grandmother had breast cancer, and then died of ovarian cancer at 86. My sister was dx in 03 of breast cancer. My tests came back positive for BRCA2+. I had my ovaries and tubes removed during my radiation. I plan to have a double mastectomy this summer in July. Since the chemo, my lower back, legs, fingers, and feet hurt continuously, even when its been 13 months. I have lost my stamina, I am on anti-depressants for the hot flashes. In March I had a mammogram and it was all clear. I am so thankful. I am waiting for results from a base line MRI I had earlier this week. I believe this will turn out well too. The only thing is that I've been having wierd headaches almost daily. I just tell myself its stress but I'm not really stressed any more than I usually am.I have a wonderful family who supports me and loves me. My husband is the best guy in the world. My life is in God's hands and I know He is in control. But why can't I just move on? Why can't this crazy pain go away and when am I not going to be so tired? Can anybody relate to these questions I am asking?

Carla Dx 3/9/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Apr 16, 2010 02:26PM TXBadboob wrote:

Carla, I'm sorry you're having to go through this and  I just wanted to let you know that you are not alone and I do relate to these things.  It's taking me a lot of time to move on, and I am going to support groups which is helping me a lot.  Praying for you now.

{{{HUGS}}}

Deen

Deen BRCA2+, ILC left breast, IDC right breast, neo-adj chemo, BMX, ooph, Arimidex, Zometa Dx 8/4/2008, ILC, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 17, 2010 10:09AM Carlatap wrote:

Thank you, TXBadboob, I've been thinking about going to a support group with my sister. Maybe it will help me not think of the possiblity of the cancer returning with every new pain or ache I have. I  received good news from the MRI-its all clear. More prayers answered.  Thanks again for replying-I know there are many of us who feel this same way. I am also making myself walk and excersize at 30 to 45 minutes at least 4 times a week. I'm hoping this will help the muscle and joint pain to lessen. This week I have a follow up appt with my onc, and I have my first appt with the plastic surgeon regarding my mastectomy this summer. I'm still in the process of deciding whether I want reconstruction or not.  Is reconstruction really worth all the pain? I am not a baby when it comes to pain, but when I read about some of the painful days following the procedure, it makes me wonder.....

Carla Dx 3/9/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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May 4, 2010 04:30AM tibet wrote:

Carla

Did you have BC in 2002 which was ER+ or ER-? How about your sister's?

 Did you do hormon treatment and chemo in 2002?

Love to you.

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May 5, 2010 11:00PM MRDRN wrote:

Carla,

I sure can relate to the hot flashes and headaches, and being Brca.   I hope you are continuing to improve each day and can find some more peace.  Maybe it just takes more time, as it sounds like you have been through so much.  Glad you have a supportive family.  I too am looking at doing a Bi Mx soon.  Please let us know how your doing.  Feel free to PM me.  I have asked myself the same queston re: reconstruction.   I am keeping you in my thoughts.

MRDRN

TAH March, 2010, SNB,BiMx with Immediate DIEP recon June 8,2010 BRCA 1 +, Stage 1 BC
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May 6, 2010 12:50PM Carlatap wrote:

Thank you newalex and MRDRN for replying. I really appreciate your thinking of me. Since I wrote last, my MRI came back all clear! I've gone to the plastic surgeon, and have decided to go for reconstruction. I will have the double mastectomy and reconstruction sometime in July. Its kind of crazy but my sister who also tested positive for BRCA2 will be having hers done in early June. We live in the same city so we can take care of each other. During my last appt with my onc, he decided that I should stop taking the trial med that I'm on (Boniva), for 3 weeks  which can cause bone pain. Well, I've been off for 2 weeks and the pain and soreness are still there but I do feel more energetic. I've been taking the Boniva -50mg-every morning since October, and seem to be tolerating it OK. It's possible that by taking this, I may not get cancer in the bones. I signed up for 3 years.  In 02 I had ductal carcinoma in situ, and did not know if it was Er- or Er+. It was such a tiny area that I was told I would not need hormone treatment, only radiation. My sister had cancer in 03 at age 39 and she had a lumpectomy, radiation, and hormone treatment-tamoxofin. My brother was diagnosed with Stage 1 milanoma, (that makes 3 out of the 4 of us siblings have had cancer) and my uncle on my mom's side has been recently diagnosed with stage 3 milanoma.  One of my daughters has tested for BRCA2 and my other daughter who is 25 is still deciding whether she wants to be tested. So....its kind of everywhere in my family..  I have a 3 week follow up with my onc on the 11th to discuss whats next regarding these aches and pains. I'm praying for wisdom. Should I pursue more testing? Should I just be OK with this on going lower back pain and leg, hand and feet pain? Is it just going to be part of my normal life? And if I'm in bed again for another week or so after surgery this summer will it become worse b/c I can't get out and walk and stay active? I just don't know.....I would really appreciate any advice.

Carla 

Carla Dx 3/9/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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May 19, 2010 07:38PM MRDRN wrote:

Carla,

I am so sorry you are having so many aches and pains.  I can relate because my knees and other bones have been bothering me as well but I frankly don't think anyone should ever "settle" with pain.  Get a second, and third opinion, and keep reading and asking questions, and try alternative therapies....we all deserve to be at our optimal level of wellness.   It is great that you are getting exercise.  I know that today when I got in the pool for the first time in awhile, it felt great and had so much less stress on my joints.   I was playing competitive tennis and I miss it so much but I do know that it is not healthy for me right now.  I am now looking forward to my mastectomies this summer....and hopefully put behind me what the BRCA would eventually take away.  I know that this doesn't help much, but I do think that when we share our stories here, including what works (med wise) it may help someone else.  Good luck at the Onc appt and let us know what the plan is .... 

MRDRN

TAH March, 2010, SNB,BiMx with Immediate DIEP recon June 8,2010 BRCA 1 +, Stage 1 BC

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